Helping women with chronic illnesses

Major Migraine Month

The best way to sum up the past month health-wise is:
My head hurt every day.

The migraine pain (over the past month) has ranged from mild at times to very severe at other times but it has never left completely (except for about three hours one day and for a couple of hours another day when I thought it was leaving but it quickly came back full force – even harder than before).

Sensitivity to light and sound have been severe all month. Sounds I normally wouldn’t be bothered by are very painful to my ears and head. I have had waves of nausea coming and going. Occasionally one eyeball will hurt for about two to three hours before dissipating.

Yesterday was the lowest level of migraine pain I have had since March 31st. I started to think the migraine was finally lifting. When I woke up today, my head was still not normal but I would no longer call what I have today migraine pain. I believe that I am now in the postdrome phase described here. I am hoping that my head will feel 100% normal soon. It has fooled me before but I think it’s really lifting this time. Time will tell.

Unfortunately, I don’t have the energy to write in very much detail about what has been happening with my migraines these last few months. In a nutshell, though, I was having some reduction in the number and frequency of migraines (after starting both physical therapy for cervicogenic triggers for migraines and acupuncture to treat migraines). I was still getting migraines but they weren’t as bad once I had started the cervicogenic migraine physical therapy and acupuncture focused on them. I was grateful to have some improvement. I knew there was no quick fix and that any improvement was worth appreciation.

Prior to starting physical therapy and acupuncture for migraines, I had noticed patterns in the timing of my migraines that suggested hormonal fluctuation is one of the major migraine triggers for me. The wonderful physical therapist who has been working on treating the migraines triggered by cervicogenic issues thinks I need to talk to my doctor about the hormonal situation. I plan to do so in my next appointment with my primary care physician (next week).

In the meantime, I saw the neurologist Thursday and it was an enormous waste of time. It was difficult for me to drive to/from that appointment. (If I don’t feel like it’s safe for me to drive, I don’t… no matter what I have scheduled. It’s not worth risking an accident). For nearly three weeks, I didn’t even feel it was safe to drive around town – much less to an appointment an hour away. Thursday was only the second time in a month that I had driven for more than five minutes. The amount of time, money and energy that were utterly wasted on that appointment totally frustrated me. That tale is far too exhausting for me to relive at the moment but the good news is that the brain MRI (looking for multiple sclerosis) yielded normal results. Maybe someday I’ll have the energy to get into more detail regarding why I believe the neurologist appointment Thursday was a waste of time.

I haven’t been online much but on the rare occasions that I have, I’ve gotten great support from other people who experience migraines. Let’s just say that apparently I’m not the only one who has experienced difficulty in finding a good neurologist for treating migraines. Thank you to those of you who have reached out to me regarding your own experiences with and knowledge of migraines. I really appreciate your support.

Now, please bear with me for going on a tangent about sleep apnea treatment… I had previously mentioned in passing the difficulty I have had finding a CPAP headgear to treat my sleep apnea. I got a new CPAP headgear on March 24th. I was very excited that (after years of unsuccessfully trying to find a headgear that my head could physically tolerate – no matter how carefully I screened out ones with materials I have a known allergy or sensitivity to), I had found one my head could physically tolerate (no sores on my head due to a reaction to the material of the headgear)! The fact that I had finally found one (pictured) that I wore night after night with no adverse reaction on my scalp was the good news.

Click for photo source.

The bad news is that the daytime fatigue and sleepiness I have experienced in about the last month (despite having gotten plenty of sleep at night… more than usual, in fact) has been so severe that I decided about a week ago to try not using the CPAP for awhile to see if the fatigue improves. (I am currently trying to determine whether the new plastic tubing for my CPAP machine might be out-gassing chemicals that are exacerbating my multiple chemical sensitivity, whether the fatigue is migraine-induced, or both). Since stopping CPAP about a week ago, the fatigue has improved a bit. However, the migraine has improved in that time too. So, it remains to be seen what caused the incapacitating fatigue and sleepiness I have been experiencing in the past month. I would very much like to go back to wearing my newest headgear, pictured above, if I can rule out the plastic tubing that attaches to it as causing any of my fatigue and sleepiness problems in the last few weeks. I know the risks of untreated sleep apnea (i.e. that cardiovascular trouble has been found to be up to three times more likely):

Click for photo source.

Needless to say, I am anxious to resume treatment for the sleep apnea since I don’t wish to increase my odds of having cardiovascular trouble. I’ve tried running the CPAP machine when I’m not wearing it to flush out the plastic tubing but I’m not sure how much good that has done, if the tubing is causing symptoms. I washed the tubing with distilled water, as directed, before using it. Other than allowing it to air out over time, I don’t really know how I can get it to out-gas more quickly.

Hopefully, the fatigue is from the migraines and not the CPAP tubing and I will be able to resume wearing my CPAP headgear soon.

My husband reports my snoring had stopped when I was using CPAP. According to the doctor who ordered the sleep study that diagnosed the sleep apnea, treating that should help the symptoms of all of my illnesses (since it’s not healthy to stop breathing throughout the night). The sleep disorder clinic had told me when I was diagnosed with obstructive sleep apnea that they recorded zero restorative sleep for me. Zero. I hadn’t had dreams in many years because I never reached that stage of sleep. With the CPAP machine, I was having dreams. That tells me I was getting into a deeper level of sleep than I had in years. Yet I was more tired than ever when I woke up each day. So, the trick now is to sort out whether the new plastic tubing is out-gassing chemicals that are causing the fatigue and sleepiness or not. In the meantime, I am seeing how I fare without it. Since the severe fatigue and sleepiness started right about when I started the CPAP and right about when this most recent migraine started, it’s hard to know for sure what’s the cause.

Managing the migraines and sorting out whether the CPAP machine is or isn’t causing the severe fatigue/sleepiness are what I’ve been focusing on lately. Other factors have prevented me from being online very much as well. Thank you for your patience. I am going to try to resume a more typical schedule for blog posts as soon as I am able. Several of you have sent me messages asking how things are going lately. I appreciate you thinking of me and would like to thank you for your support.

This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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Reading: Major Migraine Month


1 JasmineNo Gravatar { 04.30.11 at 5:40 pm }

Love that headgear – a much simpler design than than my crazy contraption lol. I wake up with redness on my nose every morning because my mask completely surrounds my nose (if it’s not on tight enough it leaks air out the sides). I’ll have to ask the company if I can order one like this.

I truly hope these awful migraines you’ve been experiencing are behind you, Jeanne.

2 EmilyNo Gravatar { 04.30.11 at 8:43 pm }

That is really nice headgear!!!

Sometimes you can put vinyls, plastics in the refrigerator and that can help them to “tighten” their bonds. There is some science behind it which I can’t remember, but I have done this off and on for years. It can’t hurt to try. Some things I even put in the freezer to work faster.

Hoping May is going to be a much better month!

3 Hayley CafarellaNo Gravatar { 04.30.11 at 9:54 pm }

HUGGING AT YOU!!! Miss you around and so sorry to hear about the amount of pain and crap that you have had to deal with. Stay strong and safe, like I know you always do, hopefully these awful symptoms will die down soon. Much love xoxox

4 JeanneNo Gravatar { 05.01.11 at 12:25 am }


Yes, the design of this headgear is definitely much more streamlined and simple than what I had tried before. The last one before this was so heavy and pushed so hard against the back of my head that my husband wondered if I might actually be getting sores from pressure rather than a reaction to materials. If I didn’t have that one adjusted that tight, it used to slip off if I dared to, say, roll over. (To my way of thinking, one should be able to roll over in bed without the CPAP headgear falling off!)

So, this model is definitely much better in that it stayed put without digging into my head and hurting me.

This one is much lighter and more comfortable than the one before it or the one before that. In addition to looking for something I’m not known to be allergic or sensitive to, I needed something that did not have a mouthpiece that could aggravate my TMJ.

The nasal pillows on the old model were softer than on this one. So, the nasal pillow portion of the old one was more comfortable for me – not that it did me much good since I never could tolerate the headgear for more than a few days because of the sores that the old one would cause on my scalp. Everyone’s different, of course, and what is most comfortable for one person tends to vary from another.

This headgear has a couple of different sizes of nasal pillows to choose from. This maximizes the chances of getting the best fit for comfort and best seal so that it works properly. As you know, I’m not normally one to plug particular brands of just about anything. However, I liked this headgear so much that I decided it only made sense to include a picture of the actual model I was talking about.

I figured there might be people who would appreciate hearing about this headgear. I think it’s really well-designed and it is really frustrating to me not to be using it. Hopefully, I’ll be able to resume using it again soon.

Thank you for your ongoing support and information! 😉


It really is nice. It took me a couple of weeks to convince myself to temporarily discontinue using CPAP in order to see if doing so would help with the fatigue/sleepiness – because I didn’t want to stop wearing a headgear that I could finally tolerate on my head.

That’s a good idea about putting the plastic tubing in the refrigerator. My CPAP machine has an optional moisture unit and before I finally resorted to stopping CPAP, I had turned it off. One of my friends had suggested that the moisture unit might actually have been increasing the odds that the tubing was out-gassing (as opposed to if the inner surface of the tubing was dry). Anyway, I had tried the machine with the moisture unit on and with it off.

Thank you. I hope May is better too. Thank you for all of the migraine information! 😉


HUGGING BACK AT YOU!!! I miss you too. It was an interesting month. Fortunately, I now (today) have had the closest to a “normal” day from the standpoint of head pain that I’ve had in a month. So, I really do think it’s more of a postdrome phase now. While my head is sore, I think it’s the type of soreness associated with recovering from the main headache… as the postdrome link talked about. Much love to you too. I am fortunate to have so many thoughtful online friends like you. Thank you! 😉 xoxo



5 JennNo Gravatar { 05.03.11 at 11:47 am }

Hugs to you Jeanne! I hope you are feeling better. xo

6 wildgirl1979No Gravatar { 05.03.11 at 3:44 pm }

Hang in there!!! Migraines are no fun. In highschool I had one for 3 months that wouldn’t go away and I suffered from them on and off for over 5 years after that. I know how frustrating the various treatments can be, and sometimes all you want is an answer. So sorry you are suffering so much. Hang in there. *hugs*

7 JeanneNo Gravatar { 05.04.11 at 2:03 am }


Hugs back to you! Well, the migraine is over but other problems have taken its place. I am still online very little in the meantime. Thank you. I hope you are doing well.


Thank you! I’m sorry you had a migraine for 3 months. That must have been terrible. Thank you for the support. Hugs back to you and I hope you are doing well.



8 FelissaNo Gravatar { 05.04.11 at 10:09 pm }

I have to agree with you that the whole appointment with the neurologist thing was a waste of time for me as well. He did absolutely nothing and the only thing he offered was a spinal tap?!? For what because I get Migraine Auras I opted out of that one and never went back. My MRI ordered by the eye doctor since we didn’t know exactly what was going on at first was also clear for MS. The most relief I have had was acupuncture but of course that isn’t covered.

9 JeanneNo Gravatar { 05.04.11 at 11:25 pm }

Welcome Felissa!

I’m sorry you too had a frustrating experience with a neurologist. I’m glad your MRI was normal as well. My acupuncture isn’t covered either (even though some people’s insurance does cover it now). For me, acupuncture pays for itself because it helps a great number of my illnesses/symptoms and that results in less co-pays for various doctors and prescriptions. I’ve been getting acupuncture for 10 years for a variety of things. I’m sorry your acupuncture isn’t covered. I know it’s frustrating.


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